Agnes, Bea, Cancer and Me: Life with a Breast Cancer Diagnosis. A powerful, humorous, kindly blunt, inspirational and moving true story of strength and resilience.
By Helen Bullen
()
About this ebook
. . . but the evidence stopped her cold. How could she have breast cancer?
Retired osteopath Helen Bullen - now an entrepreneur and business mentor, who has set up an award-winning multi-healthcare clinic - sat in the doctor's office, stunned. She wasn't ready to be a patie
Helen Bullen
Helen Bullen works with business owners to build a better life and business using her 'Commit to Achieve Principles'. A successful osteopath and entrepreneur with experience in both 'bricks-and-mortar' and online businesses. She retired from her clinical work in 2020 after 20 years of being a therapist. Helen was recognised as Businessperson of the Year by the Leatherhead Chamber of Commerce and the clinic won multiple awards from CamExpo, Clinic of the Year, Customer Service and others.
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Agnes, Bea, Cancer and Me - Helen Bullen
Bloody Hell
Days 1–9
Agnes
She was my favourite, but her cell division was shit!
Day 1: Things Go ‘Tits Up’
This is the beginning of my story of when things went ‘tits up’.
Bloody hell, I don’t have time for this,
is the thought that instantly went through my head. A letter arrived on my doormat with the words: Recall; four in 100 women are recalled. This is unlikely to be cancer,
it said almost cheerfully.
The letter was sent after a mammogram I had done on Friday, 4th June 2021. It had only been my second regular three-year screening. It was also the day my daughter was moving into her new house. I almost delayed the mammogram as it was going to be a hassle to go for the test and get to her new place in time to help her move in. But something told me to get it done.
My bloody hell
was not because I thought I had cancer; far from it. I have led a healthy life, with most medical tests proving either negative or minor throughout my life. Why would this be any different? You can guess that it was different as I am writing this book, but on that day the letter landed the bloody hell
was just irritation that I had been called back. An inconvenience to my precious time.
I thought it was going to be a false alarm.
My appointment was set for 24th June at the local breast screening centre. It was an early appointment, so I jumped in the car alone, as it was going to be nothing. Then I set off for the 30-minute drive to get myself there. In my head, I had thought about the appointment. I wondered if I had a cyst, because I thought I could feel a bit of swelling at the top of my right breast. I was not worried about the appointment; my only worry was that due to lockdown, I had to stand outside in the rain and I needed a pee.
I sat in the waiting room without a care in the world. Other women were waiting too, all of us distanced on separate chairs. I was called in to see two nurses who would tell me the testing protocol. There would be another mammogram, then a chat with the consultant radiologist. Looking back, I think these nurses knew I was going to hear bad news as they kept checking that I was okay. I was. Why would I be worried? False alarm, remember – and an interruption of my time.
I have some pathology training as a retired osteopath, so as I walked in and saw the picture of my right breast on the screen, I saw a small, dark mass area. I flippantly said, That’s not good,
as I sat down. The consultant’s face dropped as she agreed. God, she wasn’t supposed to agree; she was supposed to tell me I was wrong – but she didn’t. Even at that point, I didn’t think I had cancer. It might be a cyst or a benign lump, but it would be small, as I had not felt anything. But I saw her face and knew it was serious, but not cancer.
I can’t remember the next part of the conversation as I was still in denial, but I know that we then quickly moved on to an ultrasound. The problem was in my right breast only. My favourite breast. I will explain why later.
The ultrasound was done, and soon I heard the consultant say: I’m sorry, Helen, but it is very likely it is cancer.
On the ultrasound, it was in more than one place in the breast and in my lymph nodes. Still, my head didn’t really take it in.
The next part of my appointment was a blur. They asked for my permission, then trolleys were rolled in by a biopsy team to take tissue samples. Those would be sent away to confirm a definite diagnosis.
I felt calm in my head. I followed the instructions robotically about lying on my side, lifting my arm and bracing myself for the small amount of pain to be had. Three biopsies were taken, and titanium markers were left in my right breast. Thoughts went through my head, but not what you think. In my head, I was humming Titanium, sung by Sia. I randomly wondered if I would set off alarms when I was going through airport security. My brain was distracting me with abstract thoughts. It’s a protective mechanism, or perhaps confirmation I am a weirdo.
I was in full control and not phased, or so I thought. But my body was not going to let me hide my physiology. I started to shake, despite being warm. My legs and arms trembled, and I was desperately trying to lie still so they could take the biopsy. No matter how much I tried, I couldn’t be still. I remember telling the medical team I was sorry; it was something I could not control.
My mind was calm, yet my body was showing clear signs of the release of large amounts of stress hormones. My fight-or-flight response was making me shake with fear – a neurogenic tremor. Remember, I told you I was a retired osteopath with some medical knowledge.
Next, I was led to another room for more mammograms to check the titanium markers. (Titanium, 🎶 are you singing that song in your head yet?) Then I was ushered into a private room and a nurse was assigned to me.
I felt fine in my head, but of course, I was not!
They asked me to phone my husband, and this is how it went: Hi Eddie, I have cancer; I will be home soon.
It wasn’t my intention to worry him, but with little to no further conversation, of course, I did. How do you tell someone you have cancer when you have just found out and are trying to convince yourself and all around you that you are cool with it?
My head was saying F@ck cancer!
I was going to be saying that many more times and with more force as the weeks went on.
The poor nurse seemed bemused that I didn’t break down in tears or get angry. In my head, I just wanted to escape and drive home. She was caring – constantly asking me if I was okay. I wasn’t, but I wanted to get out of there. I hate fuss and attention. I was offered a drink and a biscuit. It was then I worked it out; if I drank a coffee and ate a bourbon biscuit, the nurse would be happy, and going home could be an option. The nurse’s face lit up when I agreed to the coffee and bourbons. I had to eat three biscuits before she felt I was ready to go home. Who knew bourbons tasted so nice and would help me escape?
I have to give a shout-out to the whole team at the centre, including the lady that took my initial mammogram in a trailer in the supermarket car park. The consultant radiologist even rang me the next day to check on me. She had pushed my results through so I would hear the next week. A surgeon appointment was organised for 7th July.
Telling the kids
My biggest upset about all of this was around my kids. I have three children I deeply care for: a son, a daughter and a step-daughter. The worst thing in this whole journey was the worry I knew I was about to give to my children. What mother would want their kids to worry about anything, let alone their own health and mortality? Yes, they expect you to die before them, but not when they are in their 20s. My first real cry was when I realised the anxiety I was about to put on them. I didn’t have a full diagnosis or prognosis. I just knew I had cancer, but it was important to me that I told them and didn’t cover it up.
I had spoken previously to my daughter on one of our regular morning runs. I told her that I had been called back after a mammogram, but at the time, we both assumed it would be nothing. Now I had to explain that I had cancer and was awaiting a full diagnosis and prognosis, which was even more worrying.
I was positive and upbeat, and I hope that helped them. I am lucky they all get on well, so I knew they would be able to support each other. But if I could take anything away from this shit journey, it would be to keep my children away from any worry. Cancer, however, is not so kind to think about those you love.
Everyone’s cancer journey is different, and it was my wish to tell my children. But every person with an illness has the right to decide how they will deal with it. Do what is right for you. But please reach out for some support.
Friends
I told my close friends that my call back was not as expected and I felt the shock waves go through my friendship group. I am the last person anyone would expect cancer to affect. But I have learnt cancer doesn’t need a reason to decide to invade your body.
My friend Jackie was the first to come over. What an awesome friend she has been throughout this, and what I loved about her is that, right from the start, she talked to me like a human being, not a cancer patient. It’s a lesson I think we could all learn when talking to people fighting this battle. My other friend Dawn popped over with my favourite flowers, peonies, and a chat. I was pretty calm and collected.
I had no idea what was to come. Lucky really.
Please let me start by urging you to get any routine tests you are offered done as soon as you can. Don’t assume everything is okay. Don’t delay; get it done. The likelihood of anything being found is low, but if by chance something is found, the odds of getting help are increased the faster you get diagnosed. Book that appointment today. Encourage friends and family to get their check-ups too. We all put things off, but there are some things that just won’t wait.
If in doubt, get it checked today.
Day 2: Agnes, Bea And Me
I slept that first night despite the chunks being taken out of my right (used to be my favourite) breast. Do I call it a breast or a boob, as neither seems right? I need to give my breasts/boobs names. They have become a very personal yet public part of my body right now.
I decided to call my right breast Agnes and the left Bea. A & B for short. I suppose I should tell you why I had a favourite side. Agnes has always been my favourite. She had a better shape.
Agnes has always stood proud quite literally, and generally, I liked her best; she looked better than Bea. How bad do I now feel for Bea, who I had looked at as a second-class body part all my life.
Agnes has got herself into trouble. A whole lot of trouble. Just like a poor maths student, Agnes’s cell division is wrong. She can’t divide, add up or multiply without making cellular-level mistakes.
Her cell division is shit!
She has been left to her own devices without correction, and now the damage is done. It seems she had decided to share her mathematical errors with my lymph nodes too.
She has to be stopped . . . and fast.
I don’t love Agnes anymore. I ignore her and wear a bra night and day so that I just don’t have to see her. I am in denial that Agnes has cancer. Instead, I am fixated on being mad at her mathematic capabilities, or should I say lack of them.
Today the messages come, and they come en masse. Kind messages from people who are starting to find out I have a cancer diagnosis. But I hate people worrying on my behalf. ‘Get well soon’, ‘You got this’ and ‘Stay strong’ are all phrases’ people say to help, but all I want is to shout back: "I AM NOT SICK!" (Well, obviously, I am, but I don’t feel it.) I want to shout back: It’s not me; it’s bloody Agnes that needs attention." Agnes, not me!
‘You got this’ is a strange platitude that people use. I know they mean well, but what does it really mean? I have no idea if I’ve got this
. Neither does anyone that throws that line at me. I think the best way people dealt with me was when they asked how I was and listened, as I told them what was going on.
Bloody hell, Agnes! You have dropped me in the shit and I am not sure I can forgive you! You had a simple job to do (cell division) and you messed it up! Why did you not concentrate harder when doing your calculations?
Agnes and I have definitely fallen out.
I made a decision today that I have to focus on positivity. I have two choices: melt under all the worry, pressure and get well messages, or stand tall and focus on the good things in my life. I have many!
I went out this evening for a dinner with friends. One of my friends is also awaiting results on suspected cancer. It felt surreal talking about our tests. How did I become someone discussing cancer – someone who has cancer?
I realised during the conversation that I was fortunate to have breast cancer. I know I said fortunate, but let me explain. Breast cancer is a common cancer for women, so the protocol for tests, examinations and treatment are set out. And once you get an initial diagnosis, you get on the medical conveyor belt for that type of cancer. My friend, however, has a less common cancer, so his journey is currently unknown. He had to fight for second opinions to even get diagnosed and there was no direct pathway for him.
Working on my positive mindset, I am grateful that I have a well-known cancer. I am on a trusted testing and treatment track, and so far, it has been fast and furious. Poor Agnes does not know what has hit her! I could bloody hit her, but in reality, that would just hurt, so I decide not to go for that option.
If you have any symptoms that you can’t explain and you have been told there is nothing wrong, but you still know it’s not your normal, get another opinion. You know your body best, so just go back and get things checked again. No one will judge you. Don’t ever feel like you are wasting anyone’s time. Sometimes things are only picked up after multiple visits.
Keep going back if you feel things are not quite right until you get answers.
Day 3: Out Of Control
I don’t want this; I feel out of control. I started my day with an early walk, and I cried all the way. The realisation that I don’t want cancer, I don’t want medical examinations and tests, and I certainly don’t want the sympathy of family and friends. For the first time, I had thoughts of Why me? What did I do to deserve this? I have always lived a healthy life. I don’t drink much, I eat well, and I have never smoked. Why, then, has cancer hit me? How did I get myself into this mess? Or should I say: How did Agnes get me into this mess?
Today is a realisation that I am ill, really ill. I walk to the local shop and meet a local couple that I know. As often happens, they ask in passing, How are you?
. Those words just bounce around my head. I have two options to nod and say, Fine, thank you,
or tell the truth. I try to say, Fine
, but those words choke. I am a truth girl and Kindly Blunt (trademarked for my business), so I reply with, I have breast cancer.
I just could not lie, and I just blurted it out. As is my way, I tell them as briefly as possible, but the look on their faces is terrible. I feel so bad that I can’t say Fine
. I feel that I have upset them, and I then spend the next few minutes trying to smooth things over by telling them I am okay about it, and it will all get sorted.
The truth is, I have no idea if I will be fine until the full tests have been done. I don’t know what type or grade of breast cancer that I have and, therefore, my prognosis is unknown. I can’t get away fast enough because I hate upsetting people. My thoughts are about them feeling uncomfortable and sad. I rush home with tears brimming and burst through the front door just as the sobbing starts.
This is real . . . and it’s happening to me.
I suppose the lesson from this is that we should all be mindful when we ask How are you?
as a matter of passing conversation. Be prepared that someone could have something that means they are not okay. When you ask that question, make sure you are ready to take on the answer.
I am going away on holiday tomorrow. It’s a trip away, glamping with friends – a birthday – organised before cancer rocked my world. I’m not sure I want to go, as I just want to hide indoors and wait for this all to go away. I know it won’t go away, but hiding does feel like my preferred choice right now.
Reality has hit as I know that I will have to worry forever about cancer, even if I beat this. Will it come back? And if it does, where? My mind is in overdrive and just won’t be quiet. I am mad at Agnes. Didn’t she remember all the fitness, healthy eating, non-smoking and minimal alcohol that I have stuck to all my life? I keep asking myself, why me? I don’t understand any of this.
Day 4: Talking To My Reflection
Today I am off on a glamping trip that was organised for my lovely friend Jackie’s birthday. If I put in her age, she would kill me, but it is a special birthday, and we are off to celebrate.
A week away for six of us. We are off to have some fun. I booked the trip months ago, and was looking forward to it, but today I feel numb. I want to have fun, but the elephant in the room is huge. Cancer is looming over me, along with all of the unknowns ahead of me. My mind and body are numb, and I go through the motions as I pack for the trip.
Agnes is still tender from the biopsies taken. I still wish she had done more of her cell division homework, and if I’m honest, I can’t forgive her for getting her multiplications wrong. Bea, I imagine, is smug at finally being my preferred boob with accurate maths skills.
As we travel to our glamping site, I make a decision to think positively. I have a quote I created when mentoring small business owners:
Negativity feels shit. It will never make anything better. So don’t do it.
It’s simple but effective . . . and it’s time to live by my life rules. I have to fight the numbness back the best I can. Going away has made me feel like I am being taken out of all the trauma, uncertainty and worry of my cancer journey. Now I need to make the best of this trip and push cancer to one side for the week. It’s unfortunate Agnes has to come, but I will keep her under wraps.
For the first time in days, I start to feel more positive. On the way, we stop for a beautiful pub lunch with our friends. I choose anything on the menu that I think is healthy. I need control in my world which has been ripped apart. In my head, I decide I can take back some control by making sure my food choice is healthy. I also decide to stop drinking alcohol completely until I am through this. I enjoy this small bit of control, despite no evidence it will help. It is good to have a focus. I need something to hang onto right now, and even this small decision helps me feel like I am doing something positive.
I start to think about affirmations that I could use when my mind is racing, and negativity is trying to push its way through. I come up with: My body is strong; I fuel it well, and it can heal. I am going to work hard on staying positive and visualising my body’s healing. Who knows if it will help? What I do know is it can do no harm.
We arrive at the glamping site to a tent with a proper bed, kitchen, sofas and an en-suite, shed-like bathroom with underfloor heating. My friends are awesome, and, despite acknowledging my recent diagnosis, they don’t dwell on it. Instead, we all focus on having fun and laughter. This trip is the perfect distraction from the mess Agnes has got me into.
The en-suite bathroom becomes my sanctuary and private place to go and shed tears when they appear. I seem to have so many tears right now. This heated shed has become my safe place to let my emotions go, to be scared and to wonder how the hell I got myself into this mess.
I have developed a habit of talking to my reflection in the mirror. It’s like I’m talking to a friend. I tell her, things are going to be okay. I tell her, she is strong enough to get through this. I tell her, whatever happens, she will cope. I agree with her that this is not fair. Is it weird to be talking to a mirror? Being weird is the least of my problems right now. All I know is it’s like a comfort to chat to my reflection, knowing that I am not upsetting anyone else. I talk to myself for a while, then pull myself together and return to my friends.
I am sure others feel this too, but when you have cancer, the last thing you want to do is upset anyone else. You hold onto your fears and emotions to save others from becoming upset. Try talking to the mirror the next time you feel you have a problem. I think it could catch on. Just remember always to be kind to yourself as you would to a good friend if they wanted to chat with you. Don’t go being mean or judging your reflection.
We spend time playing games. One completely ridiculous game where you have to hum a tune for others to guess, but it’s one that has us in stitches. Like a steam roller, it suddenly hit me out of nowhere:
. . . the realisation that I may not be part of fun life experiences like this hit me head-on. My life could all be taken away from me far too early.
I feel totally out of control, but at the same time, I have an overwhelming guilt that I need to stay strong for the people around me. No one wants someone around who is unhappy. I leave the living area of the tent to visit the bathroom. The shed, with the mirror and underfloor heating, which has now become my therapy room.
My head is full of what ifs and why me? At this point, I know I have breast cancer, but no more. I need more tests, consultant appointments and a treatment plan before I have a prognosis. I live by structure, and right now it has been destroyed. The tears flow as I watch myself break down in the mirror, yet again.
Day 5: I Am So Sorry
It’s been five days since I was told I had cancer. The consultant radiographer’s words still haunt me. I am so sorry
were the words she used when I asked if she thought I had cancer. Half of me wishes I hadn’t asked prior to the full results, but the other half of me knows I needed to know. I never expected the cancer to have spread and be so obvious, even before my official results. Agnes, you have screwed things up big style.
I am still away, and today we are off for a walk; a great distraction, and it also gives me time to chat with my friends about my story so far. Talking really helps and listening is a great skill for any friend supporting someone with cancer. I don’t need someone to tell me, It’s going to be okay
, as the truth is, how could any of us know at this point? I don’t need someone to dismiss the seriousness of having cancer; what I need is someone to listen to my thoughts.
Just listen.
Affirmations today:
I am strong, and I am a fighter.
The dreams I have yet to realise will come true.
I am living a long and healthy life.
We ended the day in a local pub which desperately needs a good lick of paint, new chairs and the floor cleaned. England are playing football, and some of the boys (namely my husband Eddie), who are football fans, sit and watch the game. England win! We celebrated with the locals. We then sat in the restaurant (I use that term loosely), where we had some very odd food. Most of it was fried and brown. But it was such a fun evening. Good to remember that places, just like life, are not always perfect. But that does not mean you can’t have the best time when you are with the right people.
Day 6: Snake Oil Sales
I started the day with the mindset that I am going to take everything in my stride and stay positive. I am going to eat well, and move and laugh as much as I can. I have a cancer meeting looming where I will be told the exact type/stage of cancer, the prognosis and treatment plan. It is exhausting, but I have to stay strong while I wait for the results.
I managed to sleep in today. Nine a.m. is when I finally left my warm bunk bed to join my friends at the front of the tent.
I have woken to feel really positive and determined to share my story to ensure that others can learn from this too. Cancer won’t stop me, and I will make something positive of this whole mess.
You are reading that story and I hope you find at least one small bit that uplifts you and helps you through whatever life may throw at you.
I have fewer periods of upset today. I CAN. I WILL. WATCH ME . . . I say to my reflection. I won’t ever give up. BLOODY WATCH ME, I tell myself.
My day is rocked when I get a call; an appointment